Conversation about Diagnoses: Help or Hindrance?

The recent diagnosis forum facilitated dialogue between people who have received psychiatric diagnoses, scientists, clinicians and lawyers. The forum was the vision of Robert Miller. Robert is a neuroscientist diagnosed with schizophrenia. Kites Trust supported the organisational aspects of the forum.

The dialogue between the diverse groups was unique for New Zealand (and internationally according to Professor Allen Frances) and showed that the mental health sector can have challenging conversations and respect views different to our own.

Robert MillerAs a scientist, Robert feels that diagnoses need to be based on scientific concepts. Quoting Wittgenstein: “Psychology (and psychiatry Robert argues) is empirical investigation married to conceptual confusion” (Wittgenstein 1953). Robert’s challenge to researchers is for more fundamental research. He asked that we stop adding to empirical data and instead try to make sense of the 100 years’ worth of data we have already collected.

The personal perspectives from the Wairarapa Like Minds Team grounded the discussion and highlighted the impact that diagnoses have on people’s lives.

Daniel Real found that a result of his diagnosis of schizophrenia was that services ignored his anxiety . Daniel developed skills to deal with hearing voices through the Hearing Voices Network and found that it was only by omitting to tell mental health services about his voice hearing that they were able to see beyond his diagnosis and help him with the anxiety symptoms that were impacting on his life. With this approach Daniel was able to get access to Cognitive Behavioral Therapy and learn skills to cope with his anxiety. A charismatic presenter, there was laughter from the audience when Daniel dramatically emptied a years’ worth of empty anti-psychotic medication boxes onto the stage.

Next up, Julie Channer talked about the ‘hit and miss’ nature of diagnosis. She had been given four diagnoses and noted that when given a new diagnosis no one told her she no longer, or never had the previous one. Julie had not found diagnosis useful personally and posed the idea of clinicians asking consumers whether they wanted one. Is there an opportunity to develop another, non-clinical, language to describe intense or distressing life experiences meaningful to those who experience them.

As the mother of a daughter with seven or eight diagnoses, both Virginia Port and her daughter had been grateful when she was eventually given a diagnosis of Borderline Personality Disorder (BPD). For Virginia, being part of a support group for parents of people diagnosed with BPD was helpful as was the opportunity to email or text psychiatrists and get a response.

Emeritus Professor Allen Frances: ‘There is a psychiatry that helps people and a psychiatry that hurts’

Prof Allen Frances started by reflecting what consumers in the room had said, diagnosis is helpful for some, and unhelpful for others.

Allen headed the task force that developed the Diagnostic and Statistical Manual (DSM) IV. The DSM is a unified system that attempted to create a common language. Allen believes problems arose when experts designed a guidebook that was treated as a bible. His point was that there is nothing sacred about having five out of nine traits for any diagnosis. That number chosen on pragmatic grounds to include the people who would benefit. The unintended consequences occurred when the system to access services and treatment distorted diagnostic decisions.

Allen is very wary of the trend towards diagnosing children, in particular, the ‘at risk of psychosis’ label that is already being used in Australia. Nine out of ten young people given this diagnosis will not go on to develop psychosis. Is setting up support groups for young people given that diagnosis a good idea. Would it be more useful to focus on easy access to good services for the one in ten when they need it and not labeling greater numbers of children and those children experiencing the stigma that comes with a psychiatric diagnosis.

Allen’s knowledge about what happened in America after the release of the previous DSM IV is that if we screen children, the use of antidepressants and stimulants prescribed to children increases. Perhaps we should temper the early intervention or ‘life course’ approach outlined in New Zealand’s latest blueprint for mental health and addiction services the Blueprint ll, with a large dose of caution.

Given that the market for drug companies is not the 5% with severe mental illness (who are already a captive market), but the wider population a degree of cynicism is wise. New Zealand and America are the only two countries in the world to allow direct marketing of pharmaceutical drugs to the public. There is no comparable lobby group for the ‘cognitive therapy industry’, mindfulness practice , Open Dialogue or other alternate approaches.

Allen’s advice to people who use mental health services is to question any advice and diagnosis they are given, to get second or third opinions and remember that a diagnosis not magic. (video of Professor Allen Frances )

Professor Graeme Mellsop spoke about the great hope that was held for progress of psychiatry in the 1970s and the dissapointment within the psychiatric proffession because the anticipated progress has not eventuated.

Professor Mellsop has researched the usefulness of the DSM IV from the point of view of psychiatrists, psychologists, consumers, general practitioners and family, whānau. Over 70% of psychiatrists think there should be less than 100 diagnoses in a diagnostic manual (there are 350 in the DSM IV and much more in the proposed DSM V).

Professor Mellsop has co-authored a paper that explores the gap between mental health service users’ expectations of diagnosis and what can be realistically provided by diagnosis alone.

Mike Sukolski: Diagnosis as a random act of Literature?In a wonderfully poetic talk, Mike argued that we don’t acknowledge the storytelling aspect of diagnosis. Rather like a medical Sherlock Holmes, the clinician positions themselves as ‘other’; and from that position proceeds to reconstruct the circumstances (plot). Finally the clinician makes their judgement : “you would have to be mad to think/do that!”

Helen RodenburgHelen challenged the idea that general practitioners have only a small amount of time to make a diagnosis. She gets to know people who come to her practice really well over the years and for that reason would not make a diagnosis without a lot of consideration.

Legalities
John Edwards and Kate Diesfeld, from the lawyer’s perspective, highlighted the fact that diagnosis is irrelevant to whether someone passes the test for compulsory treatment under New Zealand’s Mental Health (Compulsory Assessment and Treatment) Act 1992.

Kate Diesfeld has done research in the past that found only 77 out of a 1000 applications for review of compulsory status are successful. An interesting piece of research would be to look at the correlation between specific diagnoses and successful appeals.

All in all it was a fascinating day because of the range of views and backgrounds in the room. we hope the dialogue continues.

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4 thoughts on “Conversation about Diagnoses: Help or Hindrance?”

Thank you for this, I really enjoyed this. Its a question I often wonder myself. In my very early days the diagnosis was helpful, gave me a place to start from. As I learned more about the world of psych, myself and my own life it became less useful and more restricting. By then I knew enough to know that, what happens when people dont have access to the type of information and quite frankly rebelious nature that I do? Do they just accept it and believe it for ever? That wouldnt be good in my opinion, very limiting
Thank you for having this conversation with such a breadth of opinion

thank you Carolyn, i have had a similar journey. First of all diagnosis was useful for an explanation of why my life had been difficult/ challenging / different. As time went by i realised that a main stream clinical approach didn’t offer me much and now I guess i have reframed it some what. Some people may call it a brain disease but i think it is just how i am, how i respond to the world . It was a great workshop, Daniel was absolutely hilarious when he poured the massive bag of medication he hadn’t taken onto the floor. It appealed to my inner rebel and it probably would have to yours!